Communication frustration

Reilly understands pretty much everything we say to him. He doesn’t always acknowledge that we’ve spoken but I’m pretty certain he’s heard us none the less.

I’m astounded at how well we manage to be honest, we always eventually seem to get to where we want to be and to what he needs. Probably through years of just knowing Reilly and what makes him tick. Reilly doesn’t nod or shake his head either, these tiny gestures alone could help us 1000%. It is heartbreaking though during a meltdown or when he is unwell to not be able to comprehend what is happening or how to fix it. Not knowing how his day at school was or whether he’s not comfortable around someone and we can’t put it right.

Reillys preferred method of communicating at the moment is to take you by the hand to whatever he wants. If he’s not happy he screams, cries and throws things. If he’s happy you just know it, it’s there to see he’s cuddley, smiley and an absolute joy.

We tried makaton like Mr Tumble. We attended sessions to learn how to do it. Simple hand signs that eventually Reilly would pick up on and use spontaneously. Problem was holding Reillys eye contact long enough for it to click.

We have used this bookMore Than Words(pricey but worth it and will resell) for over a year now to help understand the different types of communication problems and the exercises they recommend. Its a very good book very easy to read with lots of diagrams and clear instruction.

PECS (picture exchange communication system) is what we are trying to use at the moment. I bought hundreds of pictures ready laminated from eBay. I attached magnets to the back of the pictures that I thought Reilly would use the most and attached them to a magnetic board. Makes me sound like a blue peter presenter doesn’t it? Far from it, the pictures stay on the board for approximately 1 hour on a good day. Reilly likes to take them all off and scatter them about the house.
PECS does work though and we will stick with it, when he is bored he brings the bus and slide pictures which usually means he wants to go to soft play. He will bring the picture of some chicken nuggets when he wants a trip to McDonald’s but that’s about it for now. I keep photographs on my phone of places we may visit to limit his anxiety when we go out in the car. It is important that he understands where we are headed to make him more comfortable and eliminate fear.

This is an example of a good PECS board, how it should look.this however is how ours looks today with added scribbles

Something we were encouraged to do is put the fridge in our garage which is locked so instead of Reilly being able to just go and get what he needs he must communicate to tell us to open the garage door, this would be a winner if Reilly wasn’t so fiercely independent. He would rather create a climbing frame to reach the lock. He’ll pile pans on top of the washing basket or dining room chairs to gain some height. All of our dining chairs now live in the garage and only come out once a year at Christmas.

Other than that it’s guess work and trial and error. Frustration rules the day most of the time. We have locks on the outside of the bathroom to stop Reilly getting in. It’s really difficult to make him understand that yes Lightning McQueen might need a car wash but leaving the plug in and running water continuously is not how it’s done. I could switch the tap off 200 times and he would never tire of turning it back on.

The biggest problem we have at the moment with communication is sneezing and coughing. If I cough Reilly will attack me like a banshee he pulls my hair, hits and scratches. He has had me in tears on occasions. He’s not that bothered about other people doing it although he has in the past hit me for someone else’s cough. We’ve tried warning him that it’s coming, tried turning it into a game, made songs about it absolutely nothing works, it devastates him. Maybe it’s because some autistic people feel pain attached to sounds, maybe he has misophonia an extreme emotional response to specific sounds.We just don’t know he can’t tell us and its heartbreaking!

This for me is the most difficult part of Reilly’s autism. I cannot bare the thought that we may never have a conversation but I am hopeful that he will talk, it’s not uncommon for children with autism not to talk until later years. Just try for one day to imagine you cannot communicate with your child and think about how you would get on. I would predict tantrums and frustration from both parent and child because it’s hard! It’s something that I never had to give a seconds thought to with things 1 & 2, I just took it for granted like most of us do. I’d love to see the day makaton and sign language are brought into the curriculum so all our children can communicate ❤️